So I walk into the bathroom this afternoon to find my child filling up a diaper disposal bag (read: newspaper bags that we use for diapers because they are perfect and someone gave me a WHOLE BUNCH of them!) with WATER.  I started to freak out and Troy said “No…………… ask her what she is doing.”  She never stopped filling the bag and just said “I am filling it up because I want to carry my mermaid around and MERMAIDS NEED WATER!”  I mean… geez mom.  What planet are you on?  Don’t you know anything!?

Thanks Barbie and the Mermaid tale…. now I have a child carrying around a bag full of water and a mermaid all over my house!

I couldn’t do anything but laugh really.

Recent Comments:

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• August 26, 2010 -- Be Still…
• June 29, 2010 -- Call me crazy… but we had a yard sale!
• May 7, 2010 -- David had Goliath… Kyleigh had THE POTTY!
• February 23, 2010 -- So it begins, Kyleigh’s next medical journey.
• January 14, 2010 -- Ky’s new do…

All of the kid’s clothing from baby to 3 years old are GONE.  Done… It would have been a little more emotional if I had not been still buried in boxes up to my eyes!  I want the space more than I wanted the “stuff”!  So I did it!  By Sunday I was selling clothing 5/$1 and people had come from other cities (via Craigslist ad) to buy the clothing and I must have heard 15 stories of people buying for children who had nothing!  Made my heart warm to know that Kyleigh closet has dressed many children whose parents and grandparents could not afford it otherwise!

At any rate… the night before the sale I only had 2 hours to sleep between setting up and starting the sale and I could not sleep so I watched… one of my favorite shows which Troy likes but could take or leave… Say Yes to the Dress!  The last episode had a bride that was fighting stage 3 breast cancer and I cried all the way through.  The Kleinfeld rep worked hard and got her a 10,000 dress fro $1999 and I thought to myself… wow.  THAT is where I want Kyleigh to go for her dress.  Even knowing local shop owners here… I still want her to have THAT experience!  I also thought… omg… how much will HER dress cost by the time she is old enough?!  HAH!  I had better start saving NOW!

Which gave me an idea.  Kyleigh has so many beautiful dresses.  She loves them!  Always has.  As I was selling off her clothes I kept a tally in my head and by the end of the day, her DRESS sales alone were close to $50.  So today began Kyleigh’s Wedding Dress fund!  I am headed to the bank to start her savings account that will be ear marked for her wedding dress.   I have also decided.. that I will keep the money from ANY dress that I sell of hers and put it into this account.  Hopefully in 20 years from now there will be enough in there to buy her the dress (maybe even WEDDING) of her dreams!

I guess maybe because I see a wedding a week it reinforces to me that I want her to have everything she ever wants.  I don’t want her to have to compromise on one single thing!  My wedding day was amazing but it was on a budget.  There were so many things I would have done differently but you cannot change that day once it is over.  Every parent wants to give their child the world but I am determined to make at least, the wedding day, be anything and everything she wants it to be!  I only hope, that when Kyleigh gets married, she will be able to begin to understand what that day will mean to her mommy.  Too many days of her life, I have been forced to think about what if she never gets to pick out a wedding dress!   These are things that no parent should ever have to focus on and I will not think about them unless I have to.  I want to look at her, everyday for the rest of her life, and wonder what she will look like on her wedding day, instead of thinking of what she DID look like all those hospital days.

Even though she may have looked like this on the day that I started saving for her wedding….

Some day she will be wearing this:

And it won’t be hard to spot me.  I will be the one, in the front row, who is crying so hard she cannot see straight.  I will have earned those tears of joy with so many tears of sorrow and I will spend every day, from now until then, making sure that I do everything in my power to make each day, for the rest of her life, a dream come true!Recent Comments:

• XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
• daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
• Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
• Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
• Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [more]

• August 26, 2010 -- Be Still…
• June 30, 2010 -- Because Mermaids need water…
• May 7, 2010 -- David had Goliath… Kyleigh had THE POTTY!
• February 23, 2010 -- So it begins, Kyleigh’s next medical journey.
• January 14, 2010 -- Ky’s new do…

We are getting ready to head into wedding season and I am so ready for the weddings but NOT ready for the busy”ness” of it all.  We have TWO out of town weddings and one out of the country wedding this year so its going to be action packed to say the least.  Top that off with our family vacation instead of Christmas this year and it will be a full 2010.  YES!!! I said vacation!  We are actually going to take one… me, Troy and the kids.  We are going to get on a plane and go to the most magical place on earth!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  We are going to visit our friends who live in the area and stay at an amazing hotel and take WAY too many pictures.  Thank you DELTA for the motivation (and free airfare!).  Last year coming back from Negril, we volunteered to get off a plane to allow two pilots to take our seats in order for them to get home.  We had to stay overnight in Atlanta but Delta compensated us well enough that we were able to fly our WHOLE family for vacation in December for $100 after our credits!    Our kids have NO idea so we are keeping a bit of a secret.  I get all teary eyed when I think about the fact that before the end of the year, I will watch my daughter lay eyes on Cinderella’s castle for the first time.  I will watch my son MEET Spongebob.  I will get to tell our oldest about how he got to see all these sights when he was too little to remember and watch as his eyes wander through the streets lined with millions of Christmas lights… yes we hear the Disney is beautiful at christmas.

We have looked at Disney tickets and wow are they expensive.  Our budget will likely only permit us one day at Disney but that will be enough.  The good part is that our kids are still young enough to be totally happy just living at the hotel!  We will be happy to just be us… on vacation… at a place we have wanted to go for many years now and never had the time, money or ability to.  There were times, in the past few years, that we all thought that we would never actually get to make this trip so in many ways it is the trip of a lifetime for us all.  Almost 5 years after we found out that our daughter might not live to see this day.  Almost two years after our family was nearly torn to shreds.  Almost a year after moving into our family house and selling our own… we will just be us.  A family, making memories and for 5 days… our life will be perfect.  I can’t wait!

Anyway…  I REALLY hope to get back to blogging soon but who knows… life may have more up its sleeve for us!  I am afraid to ask at this point!  LOLRecent Comments:

• XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
• daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
• Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
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Random Posts

Tonight, my daughter crossed her legs, got the urge, ran to the potty, crawled up on it (a la sitting bull style – she of course learned from Ross) and PEED straight in that potty.  She then took off two squares of TP, wiped, flushed and walked away… all while I stood in shock… with tears.  Seriously?  Where did THAT come from?  This is the SAME child who dribbled urine down the hallway at the Hopemont house not more than 2 months ago?  The same child who we were considering a permanent catheter and completely cutting off any ability to leak urine from below this fall?  The same child with bad kidneys and an even worse bladder?

Yes… that very one!  At 8:02 pm on May 7, 2010, my daughter PEED in the potty all on her own!

David had Goliath.  Kyleigh had the Potty… both were conquered.  I can ASSURE you that this “Goliath” is no smaller than the man that stood before David.  With a small stone he slayed the giant.  With a small square of TP my daughter slayed hers!  GOD IS GOOD!~!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!Recent Comments:

• XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
• daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
• Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
• Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
• Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [more]

• August 26, 2010 -- Be Still…
• June 30, 2010 -- Because Mermaids need water…
• June 29, 2010 -- Call me crazy… but we had a yard sale!
• February 23, 2010 -- So it begins, Kyleigh’s next medical journey.
• January 14, 2010 -- Ky’s new do…

One thing that I had to stop and think about as I was watching the tow truck pull away was how life seems to come in waves.  Some are waves that you can ride into the surf, others are tsunamis that catch you by surprise and even once you REALIZE they have hit they keep coming and coming.  And how I am INCREDIBLY grateful that the truck made it THROUGH the move as it was our primary source of moving our entire family’s stuff!!!!  It must have made 50 trips to and from houses and I do THANK it very much for its service, all these years, to our family!  You will be missed my friend!!!

These waves come crashing in and you might even see them coming and yet you are still powerless to stop them.  You can put your hand out in front of you or run for cover but it will do you no good.  The wave will still come.  What choice do you have?  So you wait and you ready yourself and it hits and it is as bad as you anticipated.  You watch the water recede and take with it many remains of things from the past.  It washes those things back out to sea and you will never see them again.  They might become drift wood or a coral house but the point is that even if you DO see these “things” again you may never even recognize them.  Then, you turn around, and there is the destruction.

Maybe it was because I didn’t have TIME to be upset by this today or maybe it was because I really am beginning to grow into a more patient person, but at any rate… I thought to myself … “There must be something better on the horizon”.  As I sat down to write this post I was reassured by one of my favorite songs… “Even when the rain falls, Even when the flood starts rising.  I am WASHED by the water………… Even when the earth crumbles under my feet.  Even when the ones I love, turn around and crucify me…. I won’t fall as long as You’re around me!”.  How true, how true.

Recent Comments:

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• daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
• Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
• Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
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Well a chapter of our life is officially DONE.  All the memories, both good and bad, have been waved “goodbye” to and we are headed into a new phase.  I can honestly say that this move, was one of the most stressful weeks of our life to date.  I understand when people say they “hate to move”… ugh.  Hate is not even the word.  Maybe it’s because I didn’t get the euphoria of moving into a “dream” house or maybe its just because a family of 5 has a LOT of crap but still.  The move came, and went, without our permission!  Closing came, was moved, we waited and it went right on also.  A new family now resides at our old house from what we hear they love it.  I am glad that a family who truly can love the house will be living there.  It was funny to me that the new owners moved right in, hung pictures on the wall and watched the ball game.  People talk about wanting a “move in” ready house… these people obviously got one!!!  LOL  I am so not that person… I am the person who moves into a house with a LIST of paint colors and changes to be made.  Even into my childhood home I have my list!  Troy is the same way though.  He says we would not know what to do with ourselves if we were not knocking something out or painting something!  It’s sad… but true!

I did not even have a second to take photos of our messy move because I was MORE than overwhelmed but I did get ONE pic.  I am hoping to make up some “New house” cards soon with a pic of the kids on the front porch but God only knows when I will have time for that!

Our house was sold a long time before the SOLD sign went up but our realtor’s superstitions prevented him from putting the sign in the yard…. LOL.  By the time the sign went up we were already 80% moved out.  I know that most of our neighbors knew also so it was really not a big deal but there is a certain gratification in seeing that sign in the front yard.

Now that we are here, I wish I could say that our life is calming down but it really isn’t… LOL.  Wedding season is getting ready to ramp up and with our recent publication in TOPS in Lex’s Bridal Magazine our phones are ringing!!!

As for the move, it reaffirmed to me a great many things.  Lots of things which I do not wish to nor do I have the energy to go into at the moment but I know now, more than ever, that we are in the right place in our lives.  My mother used to tell me that if you could count, on one hand, the number of close friends in your life, then you have been blessed.  We are dually blessed to have been surrounded by such a supportive church family.  This move was not all flowers and roses.  There were tears and many times when we just wanted to dig in our heels and refuse to go but that is just not how it works.  If there is anything our children will be able to say about their parents we want them to say that we ALWAYS did WHATEVER was necessary to make their lives better.  No matter how hard, or tiring, or upsetting or financially straining it was … we did it.  We did it together and we made it through.  I hope that our children will learn that there is very little place, in life, for a “lay down and die” attitude.  If you see something that needs changing… change it… moving… move it… fixing… fix it… helping… help out.  We want to teach our kids to be DO’ers.  We want them to not be critical and cynical but to approach life as a thing to be accomplished.

In the past few years we have made MORE gut wrenching decisions than most people will make in their entire lives.  Looking back, not only were they necessary but they have made us better human beings.  We are stronger, more focused, positive, and HAPPY… yes… dare we say it… WE ARE HAPPY!!!!!!!!!  It is funny how all the things you THOUGHT equaled happiness truly didn’t.  We have found ourselves in a place to re-appropriate our time and energy and it’s a good place… a happy place… a BLESSED place!  God never promised us life would be easy but He did promise us He would NEVER leave us.  We know, above all else, that HE has walked with us, behind us, and gone before us throughout this whole process… we are truly blessed!Recent Comments:

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• daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
• Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
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Random Posts

Sometimes I think you have to live in a space for a while before you can truly decide what you do and don’t need.  That is our plan for the new house.  While we are doing the bedrooms (because they are basically the same no matter what) we are taking our time to space plan the rest of the house.  I think that in the long run, this house will be fabulous… we just have to “make it ours” like we did the hopemont house!

As for now, working on the bedrooms, I found it SUPER easy to get Owen’s room done.  We have moved everything in and redid his closet and he has MORE space, in a smaller room, than he did at Hopemont…. WHY?  Because the space we do have works BETTER for him.  He is totally happy and feels very much like it is HIS room and its SO grown up looking… my baby boy is a  BIG guy now.  Sigh.

I have so many GREAT ideas for this new house and I cannot WAIT to get to crafting.  My wedding season is starting late this year so I am HAPPY to have the time to get settled and “nest” for a while.  (No… there will be NO pregnancy with this nesting phase!!!!).

For the little kid’s room I was looking for some things to personalize their beds and I found this on Etsy… how cute are these?  I think I will tackle this project.  I am in LOVE with monograms but I do not own a sewing machine that I can monogram on so I am always looking for ways to make a monogram without needing the machine to do so….

Is that not one of the cutest things you have ever seen????  I mean really.  This will TOTALLY match the style of the kid’s new bedrooms! (find it here on Etsy)

And then there is THIS:

Funny story about these lamps.  Mom and I ran to the Goodwill on Saturday to look for something and I found, this EXACT white stick lamp for $3.50!!!!  It was minus a shade but now that I have seen this I am SO excited!  I am definitely monogramming a shade to go on it!  I am sure my entire lamp will total less than $10!!!  These retail for $99!!!!!!!!!!!!! (Crayon Castles)  I am absolutely elated!

At any rate I can’t wait to see how the little kids’ room turns out!  I love decorating!!!!!Recent Comments:

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• daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
• Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
• Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
• Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [more]

• October 19, 2009 -- 10 weeks ’til Christmas (prozac anyone?)

I have a TON of stuff to sell (furniture wise)… two living room sets, etc… because I am going to have to have a smaller sectional sofa for the new living room…. but I am quite excited and I know Mom and Dad are too.  My Dad keeps saying things about how even though this is a lot of work, it will be worth it to get to see us every single day.  I also have to say that having big family dinners every night is AWESOME!  I know that studies show that children who have dinner at a table, with family, get into less trouble and are more productive human beings.  I am so proud that my kids will have the privilege of not only having a “family” dinner table but an extended family one!

As for design.  Owen’s room was easy.  Owen gets his own room because he is the oldest and because Ross and Ky are more like twins than brother and sister.  So… its easy for them to share a room and they really love it!  Owen’s room will end up looking a lot like this:

Owen’s room is narrow and his bed will nearly fill the focal wall.  His bed is similarly colored to this and we will only be using the upper bunk to save space.  Under it we will create a nook for him to use his computer and play legos.  I am hoping to find a cool smallish papasan chair and some kind of rug to complete the look.  I am going to paint the room stripes tonight and I will take a before and after shot!  We will also have that long shelf above his bed for him to display his lego creations!  Up HIGH where the little kids cannot get it!

Then… the little kids room will go green (much like the shade that is in their room currently.  Green is such a good neutral that I can mix in pink and blues to make it a nicely designed boys AND girls room!  Kyleigh will graduate to a twin bed (tear….) to match her brother and they will be laid out like this:

Two beds, side by side, some form of matching but not exactly, linens, in pink and blue.  Ours, of course will have green in them as the walls are green.

The headboard-less beds will look similar to this:

Ross will have a more masculine monogram looking something like this:

It will be interesting to see it come together.  I know it will look stunning once I am done… I just have to GET it done!  LOL  That is my goal for the weekend…. Two bedrooms… one weekend!  Pray for me…. ROFLRecent Comments:

• XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
• daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
• Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
• Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
• Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [more]

• April 9, 2010 -- !!!!!!!!!! SOLD !!!!!!!!!!!!

What made life so hard for me was that I was the person who was given lemons and I did NOT make lemonade.  I felt the insatiable need to make a beautiful lemon french pastry dessert!  (no pressure right?)  Yes… it was not enough to make it through… I needed to achieve, succeed and excel through it all.  I quickly found out that “perfection” is not possible in life.  I finally came to realize that sometimes, just existing through a tough situation, IS achieving and being successful!  Once I started to realize that, I was able to see my life for what it really is.

In the past year I have found myself in a place that has re-adjusted my priorities.  I no longer drive the brand new car.  I drive a van that is new enough, and strong enough, and nice enough.  After the end of this month, I will no longer live in the big house (I don’t say our house because this house is just that… a house… ), I will be living and raising my kids in the same house I was raised in and although it has weathered with time, I know that my children will learn the same valuable life lessons there that I did.  Is it in the best neighborhood in the best school district?  No.  But it is sufficient. I am still running the business that I love and although I have had to step back for a bit on the families end of it, the weddings are still very much alive.  I am doing about 1/2 the business I used to but it is ENOUGH.

2 Corinthians 12:9 says: ⁹But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

The thing that I am learning is that the true beauty of GRACE is that it is sufficient.  It is not always (but sometimes) abundant and overflowing, but it IS perfect and sufficient.  Learning to be joyful in the sufficiency is something that has been a long time coming for me.

This passage in 2 Corinthians is truly is a word to live by. I am realizing that in my effort to be so strong and successful, I left little place for GOD to show himself and His awesome power.  What was left for my Heavenly Father to help out with when I had it ALL under control… (HAH!  HAH!  I laugh at this now.)  It was only when my world was falling down, when my daughter was born disassembled, when my marriage was threatened, that I figured out that I don’t HAVE to be strong and successful and proud. I can just be. Be still. Be quiet. Be silent. Because when I am not busy trying to BE… HE becomes me.  Most of the time trying less, praying more, and allowing HIM to go before me… makes life a LOT easier.

Because I know me. I am a “yell”er, a fighter,a pusher, a doer, a strong willed, determined, ornery, crass, ill tempered, hot headed, overly emotional woman. I am all too often a lit fuse. I live on the edge of being completely burned out and on fire all at the same time and oftentimes even my LIT my fuse is way to short. I wish I could say I am all those beautiful things that the Beatitudes tell you to be but I am not.

Me. I am a sinner and this is my testimony.

A few things that I am but only through HIM:  I am saved by Grace. Washed by the blood. My cup is full and runs over. I walk until I cannot walk anymore and then HE carries me. I fail and He picks me up. I am quick to anger and HE calms my temper. The storms rage around me and HE walks on the waters. I am quick to act and fast to regret. He tells me “Be Still and know”…. I have these huge plans that are unattainable, He finishes what I started. In every way that I fail, He succeeds. I am weak (in body AND mind most days) and HE daily bears my burdens.  He heals, rescues and restores me.

Because you see, I pretty much suck as a person.  As a human being, I am probably not worth the poundage I bear on my frame (which is too much btw… lol).  But what I know that is somewhere in this mess of ME… is HIM.  And that is every part of me that is good and beautiful.  I can remember an old Amy Grant song that called Father’s Eyes.  I think that might have been my first experience with worship.  I can remember listening to that tape over and over and even at 8 or so years old that became my prayer.  To have MY FATHER’S EYES.  Since then my worship experience has come a long way but my priorities have remained much the same.  I want to SEE the good in things when there is none around.  I want to be loving and compassionate even when it hurts ME.  I think I prayed this for so many years that it became a part of me!  I trust too easily.  I get hurt too often.  Lying is NOT ever in my thought process.  I assume the best of everyone (until proven otherwise).  But somehow it is a fault and a gift at the same time.  At any rate.  I know me.  I know that I am ONLY the sum of the parts that my Father has given me..  I know I am NOTHING without Him and I can only pray that I would make Him proud.

(Fast forward to 1:35 on this to hit the beginning of the song)  Although I love that old Amy Grant song, my song inspiration for today is an old worship song circa the late 90′s from a little church called Brownsville.  (my Pensacola family is laughing right now… for those who don’t know WHAT Brownsville was … google it.  The Brownsville Father’s Day Outpouring, Pensacola Florida)  I can remember standing for hours in that sanctuary with people packed in as tight as they could longing to do nothing more than STAND in His presence and pour out their hearts to Him.  This song is the song that I heard the very first time that I physically FELT my Heavenly Father wrap His warm, loving arms around me.  Our family was in an upset that I felt like I had caused and my heart just longed to be held.  All of the sudden there was this rush of warm around me and I knew… i was being HELD by the arms of the ONE who would never let me go.  I know there have been many variations of the song but this one to me, is the cry of my heart today…

• I am standing beneath Your wings and I am resting in Your shelter.
• Your great faithfulness has been my shield and it makes me want to say.
• Blessed be the name of the Lord.
• Blessed be the name of the Lord.
• I will bless Your holy name, for all my days. Blessed be the name of the Lord.
• I sing praises to Your name oh Lord for You daily bear my burdens.
• Your great faithfulness has been my shield and it makes me want to say:
• Blessed be the name of the Lord.
• Blessed be the name of the Lord.
• I will bless your Holy Name for all my days.
• Blessed be the name of the Lord.

Recent Comments:

• XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
• daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
• Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
• Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
• Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [more]

• December 16, 2009 -- What faith has done.
• December 14, 2009 -- Hide and Seek
• November 12, 2009 -- For God has NOT given us a spirit of fear…
• November 11, 2009 -- It can’t end this way….
• November 10, 2009 -- Heroes and Villains

I posted this on my facebook and for the sake of saving my aching fingers I am copying and pasting most of it.  If you read it there… feel free to skip it here!

Yesterday was another “fun” day in Cincinnati. We had a day full of VCUG, Renal Scan, labs and appt with Dr. Alam. Here are the results of the testing and decisions made:

1) The reflux in her left kidney is persistent and NOT being positively affected by our extreme measures in cathing, meds etc. She WILL, without a doubt, need a ureter re-implantation within the next year or so.

2) Her bladder looks MUCH better than it used to meaning that the Gent. bladder irrigations are doing good work on it. Downside is that her bladder still holds nearly TWICE what a 4 year old’s bladder SHOULD hold. As a matter of fact, she nearly has the capacity of an adult. This is a double edged sword because it gives her the tendency to hang on to urine much longer than necessary and increases her risks for infection. BUT because it IS so big she also will likely NOT need a bladder AUGMENTATION unless other factors happen after her other urology surgeries. That is a huge THANK GOD, AMEN, HALLELUJAH!!!! Because augmentations are NOT nice surgeries.

3) Even WITH her big old bladder she still CONSTANTLY leaks urine meaning that her bladder neck needs tightening (surgery required for this also) and after that is completed she will LOSE the ability to void on her own … ever.

4) Which will require ANOTHER surgery – Mitrofanoff (tract made through the belly button for her to be able to cath from there instead of below).

5) Good news is that Alam can do all of these things in ONE SURGERY! We also have decided that it is HIGHLY likely that Kyleigh will get a MALONE while she is in the OR. Trying to put a malone in AFTER the grand scale of the urological surgeries is NOT a good idea so we will get the malone. Kyleigh is also proving to us that her bowels, intestines, GI system is going to stump everyone. Theoretically she should be able to eat, but she can’t, won’t doesn’t… She stays constipated and battling that is tiring and dangerous for her because she literally backs all the way up… If for some reason we don’t use the Malone (another surgical procedure that creates a pathway to allow for enemas without using the rectum) it can be removed relatively easily. It is likely that Dr. Levitt will end up installing this during the round of urology surgeries.

So… her surgery will be long and the recovery is TOUGH. Alam has told us to plan to LIVE IN CINCY for up to 4-6 weeks depending on Kyleigh’s healing. Kyleigh will be inpatient for a while and on TPN after surgery until the Malone and Mitrofanoff can be used.  This will still be problematic because Kyleigh will eat… especially when you tell her no!  She just doesn’t consume enough calories to sustain life.  This will not be easy for our family but we know that our upcoming move will make it a lot easier. We also are ALL in agreeance that Kyleigh will need this done within the next year or year and a half. We advocate having it done, and healed BEFORE she goes to school just because that will be BEST for her…. to have her new routine, know it well and NOT have to be pulled out of school for more surgery.

We are FINE even HAPPY about this because we have come to terms with the fact that Kyleigh will NEVER be naturally continent. We know this… we held out hope as long as we could and we now know that her body is going to do whatever it wants and what it wants is NOT to be continent… LOL. We want to do what is BEST for Kyleigh to grow up and have as normal a life as possible. We know that she will cath for the rest of her life, and we know that without these surgeries she will not be “dry”. We don’t want her to go through the emotional strain of that when we know that this is inevitable anyhow. So… we will see Alam again at the end of August / beginning of September, after wedding season calms down a bit, and we will schedule this surgery for October / November.

This will NOT be easy. It will likely be HARDER than the month we spent in the CICU because Kyleigh is OLDER and WISER and understands more now than then. Kyleigh will not be allowed to have anything by mouth for a long period of time and although we say she doesn’t eat… she is NOT orally averted. She LIKES to eat she just cannot consume enough calories each day to keep herself alive and healthy so we will be depriving her of food and we ALL know how fun that will be. It will not be like CICU when she was unconscious for weeks and all we had to do was watch the monitors and pray…

It is also likely that Troy will NOT be able to be in Cincy with me the entire time so I am trying to get myself “psyched” up to handle this on my own! Kyleigh can be a handful and very much reverts to being a “baby” when she is hospitalized.
I know the first question I will get from everyone is “What can we do?” -

Well we will be making a calendar of fun things to do and people to who will volunteer to make some time fun for the boys here at home.  We also are busy trying to collect a large number of DVD’s to keep Kyleigh entertained.  If you have ones that you would be willing to put on loan to us for a month (I promise I will Lysol the cases before I bring them back!) or you have extras of the girly movies like the Barbie series or Disney Classics (or Princesses especially) that you would be willing to sell cheaply… please let me know!  I am also looking for ANGELINA BALLERINA and Spongebob.  We were only in KCH for a FEW days in January and 4 DVD’s were just not enough!!!  I am looking at a few lots on Ebay but some of those are getting HIGH on the bids!  I have to wait for them to be CHEAP!  LOL

Another way to help is to help me think of activities and items for Kyleigh to play with while in the hospital.  After she is released we will be able to do things like the zoo and acquarium etc… but while she is inpatient we will have to have lots of fun things.  From previous hospital experiences I know that Ky loves:

STICKERS – these are doctor’s office and hospital reserved treats because at HOME they end up on the furniture and then I have to threaten people’s lives… it just doesn’t work out … LOL

PLAY DOH- At home this stuff gets left out on day 1 and then its all crusty after that.

COLORING BOOKS and MARKERS- Ky is not allowed to use markers at home without direct supervision… you can use your imagination to figure out why.  So when she GETS to use them in the hospital she thinks they are magical!

BOOKS- particularly anything pink… and princess… or Barbie.

TEA PARTY- We will take her Tea Set for all those days when she cannot eat.  Hopefully that will pacify the beast for a bit.

IPHONE games- Kyleigh has really gotten into a matching game and a puzzle game on my iphone.  I will likely put a handful more on there for her NEW before we go… you know the novelty of NEW things is always best!  So if you have suggestions let me know!

Any OTHER suggestions would be GREAT!!!  I know I will likely pack the entire house but hey.. a woman’s got to have options!

For our friends and family here… we will need your help and support in helping our boys to continue their lives normally. Ross and Owen will BOTH be in school and we do NOT want them to have to miss anymore life events or school for Kyleigh’s issues. Its not fair to them… so anyone who is willing to help out with our boys at home for a few hours one or two nights a week, that would be awesome! That way my parents can come to the hospital and relieve me or so Troy can come…. we know that this will be an undertaking by everyone but you know I believe one of the truest statements ever made was “It takes a village to raise a child”.
For our friends far away… I know that you all are SO willing to help because most of you have BEEN where we are going be it with urology, PSARP, or other surgeries. What can you do? PRAY! Call… write… keep me entertained while I am cooped up in the hospital room! LOL If you are going to be in cincy (once we know our dates) feel free to stop by and say hi!!!

Most of all we are asking that everyone join in with us NOW in praying that the PERFECT path be paved toward this surgery. We ask that you would pray for peace for our families and for strength for Troy and I. Pray that Kyleigh’s body would be perfectly prepared for the upcoming trauma and that God would speed the healing process.

Just as we always ask during surgeries we ask that you pray for our medical professionals. Pray for Drs. Alam and Levitt ( and ANY of their staff ) that their lives would be BLESSED. That their families would be BLESSED. That their paths would be made straight and that any stresses in their lives would begin to absolve themselves. Pray that their minds would be clear, that their purpose and intentions would be upright, that they would receive clarity and WISDOM beyond measure to handle ANY surgery, complications etc. that may arise. Pray that they would understand Kyleigh’s issues with pain management. Pray most of all that their hearts and ears would be OPEN to HEAR from us as parents when we tell them things that we “know” because there are times when I cannot REASONABLY explain how I know things… other than divine knowledge… but I do. I know Kyleigh and God has given me a gift to be able to be so in tune with her.. but it doesn’t do much good if it falls on deaf ears…

Start praying now and I know that our journey toward this will be smooth.Recent Comments:

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